Tuesday, December 29, 2009

5am Blood Draw......and we wait to hear what the nurse will tell us before she leaves her shift. The verdict is in your platelets are low and you will be needing another platelet transfusion this morning ........well not something you want to hear so early in the morning or at any other time but its got to get done.

So here we are at 10:50 in the morning looking at a nurse starting to prep Marco for platelet transfusion so here we go round two of platelets, I told Marco he may have to have a serious talk with his own platelets(army) to start to work so we can go home and see the kids and maybe be home to ring in the new year. Well, we will see if that will be possible.

Doctor came in today and saw Marco, they found out what the bug was so now the pharmacy lab techs will be able to find the right meds to give him. So we may be here a couple of more days before we go home, not sure.

Attached is a picture of the platelets that are going into Marco's body to help him fight off the infection.

Monday, December 28, 2009

Some info on platelet counts...sorry, no time for citations - from ACS site.

Why Cancer Patients Might Need Blood Product Transfusions

Blood product transfusions are used to replace important components of the blood when there are not enough in the body, either because they are not being made or because they have been lost. There are many possible reasons people might need blood product transfusions, such as major bleeding (due to trauma or surgery) or diseases and treatments that slow production of blood cells.

People with cancer might need blood transfusions because of the cancer itself. For example:

Some cancers (especially digestive system cancers) can cause internal bleeding, which can lead to anemia (too few red blood cells).

Cancers that start in the bone marrow (such as leukemias) or cancers that spread there from other places may crowd out the normal blood-making cells, leading to low blood counts.People who have had cancer for some time may develop what is known as anemia of chronic disease.Cancer can also lower blood counts in other ways by affecting organs such as the kidneys and spleen, which are involved in keeping enough cells in the blood.

Cancer treatments may also lead to the need for blood transfusions:

Surgery to treat cancer is often a major operation, and blood loss may create a need for red blood cell or platelet transfusions.Most chemotherapy drugs affect cells in the bone marrow. This commonly leads to low levels of white blood cells and platelets, which can sometimes put a person at risk for life-threatening infections or bleeding.When radiation is used to treat a large area of the bones, it can affect the bone marrow and lead to low blood cell counts.Bone marrow transplant (BMT) or peripheral blood stem cell transplant (PBSCT) patients get large doses of chemotherapy and/or radiation therapy. This destroys the blood-making cells in the bone marrow. These patients commonly have very low blood cell counts after the procedure and may need transfusions.Red blood cell transfusions

People who have low red blood cell (RBC) counts are said to have anemia or to be anemic. People who have anemia for any of the reasons above may need RBC transfusions because they don't have enough RBCs to carry oxygen to all of the cells in the body. Signs and symptoms of severe anemia can include paleness of the mouth, skin, and nail beds; dizziness; and shortness of breath.

Platelet transfusions

Cancer patients may need transfusions of platelets if their bone marrow is not making enough. This happens when platelet-producing bone marrow cells are damaged by chemotherapy or radiation therapy or when they are crowded out of the bone marrow by cancer cells.

A normal platelet count is about 150,000 to 400,000 platelets per cubic millimeter (mm3). When platelet counts drop below a certain level (often 20,000/mm3), a patient is at risk for dangerous bleeding. Doctors may think about giving a platelet transfusion when the platelet count drops to this level, or even at higher levels if a patient may be at risk of bleeding because of surgery.

If there are no signs of bleeding, a platelet transfusion may not be needed even if the platelet count is low.

Currently there is one drug, known as interleukin-11 (oprelvekin, Neumega®), that doctors can give to help raise platelet counts without transfusion, but it does not work right away and is not widely used at this time.

Cryoprecipitate transfusions

Cryoprecipitate may be given to replace several blood clotting factors such as:

factor VIII (missing in patients with hemophilia A)Von Willebrand factor (needed to help platelets work)fibrinogen (the major part of a clot)People with hemophilia are now more likely to get pure factor VIII, which can be separated from the rest of the plasma. Unless they are bleeding, people with cancer rarely need cryoprecipitate.

Granulocyte transfusions

Chemotherapy can damage cells in the bone marrow, and patients getting chemo often have white blood cell (WBC) counts lower than the normal range of 4,000/mm3 to 10,000/mm3.

Granulocytes, especially certain kinds of granulocytes known as neutrophils, are very important in fighting infections. When patients have low WBC counts, doctors carefully watch the number of neutrophils. The blood count that is watched is called the absolute neutrophil count, or ANC. People with neutropenia (an ANC below 1,000/mm3) are at risk for serious infections, even more so if the count stays down for longer than a week.

At one time, granulocyte transfusions were commonly given to cancer patients who could not make enough of these cells on their own or whose granulocytes had been destroyed by disease or medicines. But for many reasons, such transfusions are now rare. First, it is not clear how well the transfusions help in reducing the risk of serious infections. Granulocyte transfusions can also cause a fever known as a febrile transfusion reaction. And they can sometimes transmit infectious diseases, such as cytomegalovirus (CMV), which can be dangerous for people who have weak immune systems.

Instead of transfusing granulocytes, doctors now commonly prescribe medicines called colony-stimulating factors or growth factors to help the body make its own neutrophils. Examples include granulocyte colony-stimulating factor (G-CSF), also known as filgrastim (Neupogen®) or pegfilgrastim (Neulasta®), and granulocyte-macrophage colony-stimulating factor (GM-CSF), also called sargramostim (Leukine®).

So far it's smooth sailing ......no side affects, except from the Benadryl that was given to him earlier. He is still feeling drowsy ......the medication didn't even give him a chance to crack a joke, let alone a sentence cause it knocked him out.

Well at least he is relaxing and not thinking about what the hell is next.....maybe I should ask for some Benadryl. It's been pretty quite around here since Marco has been asleep since 10 o'clock this morning and it's about 1:45pm. He does wake up to see if I am here and goes back to sleep or at least that is what I like to think he is doing.

I was thinking of just sitting on the opposite side of the bed to trick him. He is so knocked out that if there was a lake outside this room you could pull of the scene from Parent Trap, where the girls put the soon to be step-mom on her mattress in the lake floating.....he wouldn't even notice right now.

We are waiting for the lab to come up with a antibiotic to kill off infection in Marco's blood. This will be given to see if we can get rid of it and hope the platelets will kick in as well to start to re-boost his immune system.

Here we thought we were going home! Yeah, well that changed real quick when Marco had a fever of 101 about mid-night. I knew something was up because they told us that the fever was a sign of the body fighting something besides cancer.

Nurse came to introduce herself to us this morning, she continue to explain to us that Marco needed platelets because his count was very low. Really, your kidding right is what I was thinking, come on now what else can be thrown at Marco. Note:( Nurse mentioned blood transfusion but she was taking about the platelets not whole blood)

I swear I thought I was dreaming but no, sure enough she wasn't she said she was waiting to get approval from the doctor to start the platelets.

We also got the test results today Marco has a blood infection, he apparently has a bug in his body. Once they verify which bug they will give him the proper antibiotics. The platelets will run for about an hour so I hope he doesn't get any of the side affects mentioned to us. This infection he got couldn't be giving by person contact or food that he might had eaten. It's a bug in the body that just turned on itself they believe it's in his intestine because his immune system is very weak due to the chemo.

Nurse brought in a large bag with light gold syrup liquid in it. I thought it looks like liquid gold. As the nurse opened the valve for the release of the platelets to go intravenously it flowed so slowly with in the clear liquid of the other saline going in. As if like magic it was slowing working its way down the line and finally came into Marco arm. WOW is what I thought , this shit better work was more like it to be truthful. Well, just wanted to throw in some writing skills I thought I would share with all of you. But, it was amazing to see it flowing like that.

Platelets have gone in and now they run for about an hour and so far so good the Benadryl they gave him in case of an allergic reaction has made him drowsy so he is taking a nap and I don't see any physical reaction so we are good right now.

Sunday, December 27, 2009

Marco had a fever of 102.4 at the house and we called COH. Ended up going to the ER at COH around 7pm. He was admitted at about 12am with a fever of 103.2. Test showed his white blood count was very low and so where his platelets. Antibiotics were given last night to fight off any infection.

This morning he is looking better that yesterday, but he did give me a scare. He will be keeped here for a couple of days to make sure everything is ok.

Thursday, December 17, 2009

We have been here for three days now and I am starting to really hate it. I am starting to hate to go to the bathroom, go to the lobby,or just out of the room to tell you the truth. There is only one way in and one way out.....no detours, no short-cuts, no trying to ignore what is going on just on this floor. I have cried myself to sleep just thinking of all the folks up in here and what there families are dealing with.......you can't help but to feel for what they are going through.

Some of these patients we have seen around City of Hope in clinic or here during chemotherapy. So it's easy to think don't look, keep going, but you do look. Just to make sure everything is alright even if its not. I guess that is just how we are build to look even if you have no business looking...we look and I do. I thought about wearing my damn sunglasses but I think someone would think something is up, especially after visiting hours are over.

I want to reach out to the whole family and give them a great big hug and say everything is going to be alright but the truth of it is, it's like Marco says "It is what it is."It is a raw reality and we are very exposed to all of that here.

I am already a mess being here again, having Marco go through this shit again, being here watching them put poison in his veins and counting on "hope" that it will shrink the "F"ing tumors.I sit here and watch him tolerate this ,wondering what goes through his mind. I know that the fear is tremendous ,we all feel it. The unknown is what scares me the most, I think.

The what and where do we go from here is scary shit too. We have to just sit and wait to see what the chemo does. Helpless is what I feel. Wanting to do more and I can't, is like having my hands tied up behind my back. Like Kriticona said in the last post you just want to find out who is exactly responsible for all this so I can just give them an ass kicking ,they wouldn't know what hit them. Whom ever it is!

Well today the kids came down to COH, thanks to Salt-n-Pepper and Medicated Man. The nurses didn't want Marco to go down to the lobby. But later on in the evening they made an exception to let him go down to the main lobby for about 5 min. which we all enjoyed.

I would like to thank everyone for all your support and thoughtful words we really appreciate each and everyone of you.

Handsome we know you can do it again! We are all here for whatever you may need weather you want it or not. We love you!

Why are you crying? Marco asked after our afternoon walk down the hall...so I turned to him both with teary eyes and said cause I can. lol

Tuesday, December 15, 2009

After a long day at COH yesterday, they didn't admitt him to start chemo till today. So far we have been waiting patiently while all the "pre-chemo" meds are given. Chemo is schedules to start at 4pm today. I really hope it does so at least he can sleep through the night without a lot of interruptions. The kids again will not be able to come up to the room to see their Papa. And it sucks....because we love to have them here with us but due to the swine (and its understandable) they are not permitted to come up to the lobby and the rooms.

Handsome, we are crossing our fingers that the chemo will do it's job and shrink those damn tumors. We are just hoping that all goes well as it has. Hope the chemo is tolerable and you don't have to many side affects. Focus on being home for Christmas with the kids. We love you un chingo!!

Friday, December 11, 2009

Sorry, I haven't been able to write but it's been hard to even type one damn word without me having to stop typing because the damn waterworks in my eyes...........I can't see a damn thing I was writing....... so I will try to update often, just check in once in awhile to see if I did.

I would like to thank everyone for all your thoughts, and words of support to us. It means a lot to all of us.

So the fight continues on......

Well, it's been three weeks since we found out that the cancer came back with a freak'n vengeance. Marco started his chemo the next day. Two days ago , Marco was giving me a heart attack, he started to gag really bad as he was taking a shower, turns out that his hair started to fall out.As he was taking a shower he went to rinse the shampoo out of his hair and the water went into his mouth with a hand full of hair.Marco said he never gagged so much in his life. I told him he needed to shave it off. I told him I was not going to do it .... he ended up going to the cowboys (Barber Shop).I was hoping we could of waited a couple of days more, so we could take our Christmas pictures. Oh well, now we have to wait awhile longer.

I hate having him loose his hair.....it makes me mad that all this has to happen to him all over again. With no reason at all. I hate everything about it.....CANCER SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!I really can't yell it out loud enough!!!!!, in my head, out loud ..... at all really.

Our last visit at COH was not a good one.....Dr. Granis told us that he was very sorry that the cancer came back and he would hope that the chemo would do it's job and shrink them away basically. He also said that surgery at this time would not be an option....we will be meeting with Dr. Chow to talk about their meeting they had today to discuss Marco's case with the board and see what they thought and what strategy would be made next.

Dr. Granis was sure that 99% chance that the surgery wouldn't be an option so that leaves a 1% that someone may take his case and say yes I will do the surgery. Hey? you never know , someone may....

Our New Blog

What is Soft-Tissue Sarcoma?

Soft tissue sarcomas are cancerous tumors that originate in the soft tissues of the body.

These tissues include muscle, fat, blood vessels, nerves, tendons and the lining of the joints. Marco's sarcoma started off as a tumor in his calf muscle in December 2007. The tumor was surgically removed, then treated with radiation.

The cancer later spread to his lung area, the tumors were also surgically removed, his body treated with chemo. He had three more tumors in his lungs, which they tried to shrink down with chemo.

Doctors had ruled out any more surgeries after chemo but they finally agreed.

On March 15, 2010 they removed the three tumors from his lungs, a section of the lung and diaphragm and three sections of ribs. Marco was in intensive care for over a week fighting an infection.

A CT scan showed worrisome signs that the cancer was back and it was confirmed with a PET scan.

Marco went through the maximum number of chemos to try to shrink that tumor. The tumor was not being responsive to the chemo in the shoulder area and there was a new tumor discovered near the aorta that was showing some response.

On Jan 15, 2011 Marco started 6 weeks of radiation aimed at his chest area, 5 days a week 30 min a day before surgery options were put on the table again.

After much debate, surgery was completed March 28, 2011. Marco underwent a painful recovery at home, only to discover over the Labor Day weekend that the sarcoma has spread to his brain.

Marco had brain surgery September 2011 to have the brain tumor removed. He also completed radiation to the operated area. On October 2011, Marco exhausted all of his treatment options at City of Hope. Marco entered home hospice care.

On March 3, 2012, Marco passed away at home surrounded by his family. You can read the posts and archive to read his story.